They also serve who only

Oct. 18th, 2017 02:39 pm
desperance: (Default)
[personal profile] desperance
As I write this, Karen’s in surgery. By the time I can post it - for I have no wifi at this hospital - we’ll be back at the apartment, and she’ll be fine. Drowsy, maybe. It’s a minor procedure, to connect a port to her bloodstream so that she can be a cyborg for a few days; local anaesthetic and a sedative, no more, but they say she’ll go to sleep.

We have a room that is ours for the duration, and all I have to do is sit in it and wait. Half my task here is waiting. (I have never liked waiting, and do it poorly.)

Outside our room in one of those windowcleaners’ cradles that hang on cables from the roof. Two men are in it with all the tools, and they are doing all the things to the wall at my back: hammering, sawing, drilling. It’s like being in the apartment, transposed to a minor key: for there they are building another tower block just next to ours, and that affords us all the noises of major construction.

I am in a weird mood, I find. I feel ... pent. Potentially eruptive. Popacatepetl in miniature. It’s just the waiting. Karen will be fine, and so will I.

I’m rereading an old favourite novel, Elizabeth Lynn’s “A Different Light”. I still hope to meet her one day, for I know she’s local and we have friends in common. (I’m also rereading “The Count of Monte Cristo”, though I have no hope of meeting Dumas. That’s on the other Kindle, back at the apartment. Reading different books on different Kindles may seem perverse, or contraindicated, but really it’s just about power management. This one, the original, a full charge lasts for weeks; t’other is a tablet-in-embryo and I only get a few hours out of it, less than my phone even.)

I thought I’d be doing more work than I am, but apparently a man can just read and shop and cook and watch TV. Maybe after this week is over, when the procedures are behind us and Karen’s just apartment-bound in neutropenia, I’ll find the mindspace again. These next few days are going to be rough: apharesis and chemo and then at last the transplant. At the moment she’s in a lot of pain - or would be, but for the shots - which they tell us is a good thing, a sign that the process is working as it should. Her bone-marrow is sending lots of stem cells out into her bloodstream, ready to be harvested, yay: but this is a painful process, and her bones ache. Tonight’s going to be the worst of that, and she’ll have the discomfort of today’s operation to deal with also. Plus a lot of stress about tomorrow, when we’ll be all day at the clinic.

Now there are weird noises happening just outside the door. Power-tool of some kind, I think. I’m not going to look. They said I can go down to the cafeteria and get some coffee, but I think I’m just going to sit here and wait till Karen gets back.
desperance: (Default)
[personal profile] desperance
Day Minus Four, and this is the last of the easy days we get, this side of the countdown. Well, they're all fairly easy for me, obvs: all I have to do is shop and cook and wash dishes and keep an eye on Karen. But we've had a week of largely being in the apartment with no calls on our time; she's had injections morning and evening (when the doctors come to us), a regime of many pills, and that's been it.

Tomorrow morning, we go to hospital for a surgical procedure, to fit Karen with a port below her clavicle, a direct line into a blood vessel for both input and output. Thursday they tap her precious bodily fluids for a few hours, to filter out 117 million stem cells; then they immediately turn the tap the other way and pump in more chemo. And more yet on Friday. Saturday is Day Zero, when her stem cells are returned to her to start restoring an immune system, hopefully one with better discipline, that won't be trying to eat her hereafter.

These few days are going to be the hardest, by the doctors' own admission. After that it's a couple of weeks of recovery in more or less isolation. If you're curious, look up "neutropenia". Karen gets to eat astronaut food and/or very well-cooked meat & fish. No salads, no fresh veg, no fruits. We wear masks, and she probably doesn't leave the apartment. She probably won't want to.

And then we're done, or at least they're finished with us. We come home (and trust me, you have no idea how attractive those words sound), and spend the next year rebuilding Karen's health. Lots of home-cooked food (hah!), lots of rest. A degree of care in social contact [get your flu shots, people! Herd immunity is going to be our friend, for the foreseeable future]. An ongoing drug regime for a while, but nothing onerous. Oh, and making friends with the cats again, because we will smell of the vet.

Negative time, positive vibes

Oct. 15th, 2017 10:14 am
desperance: (Default)
[personal profile] desperance
Good morning, from Day Minus Six! (I actually nearly typed Seven there, which would have been wrong. Happily I had the wit to check. These negative hours pass inconsistently, I find, and I lose my place in the calendar.)

This morning I learned in Mexico what had eluded me for five years in California: that not only does the Bay Area have an active cricket league, but that Sunnyvale has a cricket club which is a bright star in that league, and has a dedicated permanent cricket pitch a short cycle-ride from our house. I may have renewed sports fandom in my future. Ah, the crack of willow upon leather: how I have missed thee, my Hornby and my Barlow long ago!

Karen had a couple of utterly miserable days post-chemo, constantly sick and not at all interested in food. Ginger ale and water saw her through, with the aid of ginger candies; yesterday she had oatmeal for breakfast (how right was I, to bring steel-cut oats from California? *preens self*), a little soup for lunch and a little chicken and brussels sprouts for dinner. This morning I am making French onion soup and croutons, and we will see how the day plays out.

They're odd, these days. We're very detached from the world in here, and with Karen having been so sick we're a little detached from our own group as well. Everybody else had a roof-party yesterday, with real Mexican food and music; we lingered below in the backwash. We see doctors morning and evening, with Karen's shots; I go to the store as often as I can make excuse for it; otherwise we hang out in here, reading and dozing. We haven't even been watching much TV, though Netflix is a saviour and "Breaking Bad" turns out to be really rather good. I've been working on the Crater School - oh, and cooking, obviously - and I have The Count of Monte Cristo on my Kindle. An old friend, and always reliable. (Actually I think it a work of genius; our lawyer and I bonded over that, last month.)

With that first round of chemo having been so hard on Karen, we're anticipating a difficult second week, because the next round will be worse. But we're a quarter of the way through this whole process now, so that's a thing. And Karen will still be weak and immunocompromised, and it may be a year before she's fully recovered, but nevertheless. Our friends are awesome, and I'm there to do all the things, and with any luck it will all prove worthwhile. *nods affirmatively*

Separate checks and balances

Oct. 13th, 2017 12:00 pm
desperance: (Default)
[personal profile] desperance
Day minus eight, or "Friday" in the common tongue: and Karen is ongoingly sick, except for the brief windows afforded by her anti-nausea medications. Of course we expected this, and in honesty it's not as bad as my worst imaginings; but over the last twenty-four hours she's taken in nothing but water and ginger ale, and most of that has come back out again. And of course she feels lousy, and of course I can't help. My prime function here is to cook, and she doesn't want to eat. I mostly eat in the other room, so as not to upset her further.

Other people in the group are having other symptoms, but I think Karen's the only one who's still throwing up. They say it should last no more than forty-eight hours, so fingers crossed.

In other news, there is no other news. During this stage of the treatment we don't have to go anywhere; the medications she needs are brought to us here in the apartment, in the form of injections morning and evening to stimulate her stem cells and encourage them to move from her marrow to her bloodstream, where they can be more readily harvested. Also she has many pills to take, but those are here in our little blue bag, ready to be supplemented by others from the little white bag at need and on instruction. Instructions come through the cellphone we were given; we are a WhatsApp community, chit-chatting back and forth from our separate monkish cells. That's probably why it's called a cellphone, right?

There's a communal area up on the roof which is actually rather nice. Views of Popacatepetl and so forth. Karen's not up for going there just now, but hopefully in a day or two, when she's feeling better. Meanwhile I shop and work and noodle on the internets. And scratch. I have mosquito bites all up one shoulder, and it turns out that mosquito bites are itchy. They itch for days. Who knew?
kaberett: Clyde the tortoise from Elementary, crawling across a map, with a red tape cross on his back. (elementary-emergency-clyde)
[personal profile] kaberett
Hi, I'm Alex, my pronouns are they, I have hilarious boardgame-related trauma; I'm going to want five minutes to read the rules in silence before we start; and if I ask a question about gameplay that isn't addressed to you by name and you're not [personal profile] me_and, please pretend I didn't say anything.


As I periodically mention, mostly whenever I make notable progress of any kind, for a variety of hilarious reasons I find the vast majority of boardgames intensely stressful, and this gets worse the less I know the people I'm playing with. Like I said in my previous post, over the past two years I've gone from "cannot even start to play a game I've had long-term interest in, in my own home, with my partner, who I trust, with no-one else present, without bursting into tears twice just reading the rules" to "getting a bit of an adrenaline kick when I start my second new game of an afternoon with strangers, in a pub, when I was already primed for social anxiety for reasons that do not need exploring at this juncture".

Read more... )

Time was away and somewhere else

Oct. 11th, 2017 10:07 am
desperance: (Default)
[personal profile] desperance
We count the days differently, here in the Clinica Ruiz. Monday was Day Minus Twelve; if today is Wednesday, as I earnestly believe, then it is now Day Minus Ten. Day Zero will be the start of the rest of Karen's life, when she receives her stem cell transplant. The countdown from now to then is all about preparing for that day.

Monday was a day of driving back and forth all over Puebla, for measurements and tests and consultations in numerous clinics and hospitals. I have been in three cities - Taipei, Seoul and Mexico City - each of which I was assured had the worst traffic in the world. Puebla's is certainly not a competitor, and yet... I'm not actually actively scared out there, because our driver is awesome and native to this place, but it ain't good for me. I get hypervigilant and stressy, when cars are flying at us from all angles and seemingly with no regard for their own likely survival let alone ours.

My prime task here as Karen's caregiver is to keep her fed. Given that I've been doing that for the last five years or more, I was weirdly stressed about having to do it here - strange city, strange language, strange kitchen, strange foods, yadda yadda, not to mention how the treatments may affect Karen's appetite or internal economy - but I have found my happy place. The kitchen is no better than I had expected and in some ways rather worse - I have never before encountered a corkscrew that is actually not capable of opening a bottle of wine - but the shopping situation is much, much better. Just around the corner from our apartment is a store called Mega, which appears to sell everything. Certainly it sells enough to keep me happy and active for a month. I have no idea how much money I'm actually spending, but I've decided not to care. So far I've been to Mega three times in two days (including one emergency dash for a corkscrew, which I did of course not know the Spanish word for, but my mime of a man opening a bottle of wine was apparently outstanding: the nice guy I performed it for smiled broadly, practically took me by the hand and led me all the way across store, from the wine section to the kitchenwares. Me, I think they're missing a marketing opportunity: a few fancy corkscrews distributed among the wines, cigars and fancy charcuterie would find a ready sale, I suspect), and I expect to go back on a pretty much daily basis. I love it there. They have whole aisles of gourmet food, imported from all over.

Yesterday (Day Minus 11) we got to meet the great Dr Ruiz himself. He was professionally charming, swift and efficient: everything was fine, so treatment could commence immediately. Happily the same was true for the others in our group (we are Group One, so obviously best, and there are four pair of us: a couple from Aruba, a couple from Florida, an aunt-and-nephew pair from Norway, and ourselves) so we all trooped up to the chemo room for the infusions thereof.

Nobody's hair fell out, nobody threw up, nothing nasty appeared to happen at all. Two hours of actual chemo was followed by three hours of something designed to protect various internal parts from damage. I finished a Crater School chapter, Karen read, everybody except me talked quite a bit. It's a bonding experience, this whole thing, a community effort. Which I guess is partly the point of dividing us up into small groups. Us and our driver just exactly fit into our van, and we're all in the same accommodation block. Once we're settled into the rhythm of the thing, I anticipate wild parties up on the roof terrace.

Today we're back in the chemo room for a second treatment, the same drugs over the same five-hour stretch; but after that we're free for the day. And the really good news of last night was that our luggage finally reached us, after three days without. We get to wear our own actual clothes again, rather than whatever-we-could-find-in-Mega; and in my case, for I am an idiot, I get to take my own actual medications again, hey-ho. Hereinafter Softly shall take charge of those, in my carry-on bag. When in doubt, rely on the teddy bear, that's what I say.

My first intent, on returning to the apartment this afternoon, is to sharpen the bloody kitchen knives, I am just sayin'.

ten good things

Oct. 10th, 2017 03:51 pm
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett
1. Yesterday afternoon, at 4.30pm, I sent off the latest draft of the current paper to my co-authors in advance of our meeting on Tuesday. I had been working at it steadily, in small chunks every day. At no point did I stay up past midnight working on it. It isn't perfect, partly because it can never be and partly because most of the outstanding stuff relies on getting input from a co-author who's been avoiding my e-mails since April; I'm very pleased with myself for maintaining sensible sleep cycles, and for sending it off "unfinished", because I don't think there is actually much to gain from me carefully polishing the presentation and formatting of an appendix that is not yet complete.

2. The casserole my mother bought me (I think when I started the PhD) is currently full of apples I brought home from my parents' on Saturday evening; I've done about half the bag, and everything smells correct. (It's James Grieve; they're mostly not available commercially, but they're what I grew up with, and I'm always faintly disappointed by apples that aren't them. So: I gathered up a quantity of them, and I'll gather up a quantity more when I go for dinner tomorrow, and I'll jar them, and I'll have enough to put on yoghurt and in crumble and in cake for the next year, I hope.)

3. Passing a pound-a-bowl market earlier today, it transpired that the cardboard crates of two-or-so kilos of blueberries really were one quid each. So I got one of those (I was not going to buy more, to get home on public transport), and I need to decide how many to freeze and whether o jam any and if I want to make clafoutis happen, and so on and so forth. This is a lovely problem to have.

4. Shortly afterwards, while poking around charity shops looking for yet more tablecloths (pace the Graun), on my way home from a hospital appointment that was uninspiring but unproblematic, I found a pasta maker for fifteen quid. Nobody I asked said it was a bad idea quickly enough, and that's how I ended up heading home on public transport with a lap full of pasta machine and two kilos of blueberries. "...", said a friend. "How does this stuff even happen to you so much" "I really don't know how you live like this" "But well done" -- which I will take. (This also, conveniently, provides me with My Next Cooking Goal. I think I probably don't care about the spaghetti attachment but I am eyeing up the ravioli one...)

5. I am sitting in the corner of my sofa, facing the French windows, looking out on the grass and the sunshine. (I love this house.)

6. I am now, after today's adventures in public transport, most of the way through CN Lester's book Trans Like Me. I keep crying over it in public. I have been earwormed with a song off Come Home, Not Again (and have just put it on: I'm used to breaking - but not this time/Of all the things you've taken, I'm not giving me from mine/I know I'm better lonely but alive).

7. On which tangentially-related topic, I recently got my act together to actually listen to Jesus & His Judgemental Father's latest, It Might Get Better, and I just absolutely adore the lyric my breakfast is an existential crisis. And I have a whole pile of books to curl up and wallow in, which I'm very much looking forward to -- Provenance, which I haven't yet had brain for, and the new Max Gladstone, and the new Nnedi Okorafor along with some of her back catalogue, and all the Kai Ashante Wilson I just acquired, and...

8. Board games! On Sunday I went to a board game social being run by my BSL-teacher-now-friend (having been a longstanding friend of A's)! I negotiated social anxiety in the run-up! I played two new-to-me games, with one person in the group each time that I didn't previously know, and it... worked? I didn't cry? I panicked a bit at the start of the second one but actually it was okay? I did the thing? I won one of them? I... am really, really proud of myself. I am so aware of how much progress this is: eighteen months ago, or thereabouts, I finally finally managed to persuade myself to sit down with a rulebook and an Adam in our living room and have a go at playing Thud!, which I'd wanted to basically since I saw it being play-tested at a Discworld convention. I think I ended up crying twice just reading the rulebook, while A was in the kitchen carefully giving me space to have a panic? I ended up crying a bunch more over the course of our couple of experimental collaborative games? ... I just played two new-to-me games with strangers, on no more prep than breezily informing people that I have hilarious boardgame-related trauma, would want to spend five minutes anxiously reading the rules in silence before starting, and that if I asked a question about game mechanic and it wasn't addressed to you by name then pretend I didn't say anything and let A answer. I... am so pleased with myself.

9. ... slipper socks. I sort of resent that I like them so much, and they are the precise opposite of what the podiatrists I was seeing wanted me to do for wearing around the house, but fundamentally I really hate slippers and would by defaul be barefoot but also my feet get really cold really quickly. So now I own two pairs of ridiculous slipper socks, and I wear other socks underneath and slouch around in them, and I spend much less time with my feet painfully cold?

10. ... and on Thursday I'm heading down to Brighton for The October Ritual, an aquarium trip, and Terre á Terre, which I've been curious about for a while.


There is lots that is good that is going on. I'm spending the weekend in Cornwall (well, driving to and from -- a lightning visit is To Be Made), and while there will be Wrangling To Be Done I am also, very much, looking forward to going (however briefly) home.

Mexico, we are in you

Oct. 9th, 2017 07:45 pm
desperance: (Default)
[personal profile] desperance
I suppose the getting here could have been more fun - for values of "fun" that include running everything down to the worst imaginable setting - but it's hard to see how.

We set off at oh-god-early, courtesy of the lovely Laura's picking us up and dropping us at San Jose officially-international Airport. In fact we flew to Dallas, Texas, which is not quite another country despite rumours to the contrary. There we waited for our tiny plane to Puebla - and while we waited Karen nodded at a couple of women in wheelchairs and said "I bet they're going to Clinica Ruiz also." And then defied all the laws of logic and common sense by, y'know, going up and asking.

And was right, of course, so we had companions: onto the plane, and settling down comfortably, and getting the safety talk - and then getting the pilot on the intercom saying that Popacatapetl had erupted, and Puebla airport was closed because ash-plume, and please would we all get off his airplane now.

So we did that, having little other option; and the nice competent organising lady said there was a flight leaving for Mexico City in an hour and would we all like to be booked on that instead? So there was a general outcry of "Yes", and she started rebooking forty people one by one for a plane just about to start boarding on the other side of the terminal.

When there were twenty minutes to go, while Karen was still trying to persuade our phone provider that they really should let us call Mexico and warn the clinic that we were arriving at a wholly different city, the nice competent organising lady figured out that all these disabled people needed priority rebooking and a speedy cart to whizz them to the gate. So we got that, and arrived in the very nick of time, to find them holding the gate open for us in an almost literal fashion.

So we plunged aboard, and flew to CDMX (see? I have not forgotten all my cool!), and wandered insouciantly through immigration (I suspect they very rarely turn away that many people in wheelchairs) and arrived at baggage claim to find that our luggage had not in fact made it onto the plane. So that was an hour of standing in line and filling in forms and not really believing him (fortunately, as it turned out) when he said that the bags would be flown in tomorrow and delivered to the clinic same day.

And then at last we exited airside to find our lift waiting for us, and we hauled aboard the van and drove the two hours from CDMX to Puebla, and if you ever hear either of us complain about California roads again you may swat us abaft the ear, because oy. Also ow.

And then we were here, in this interesting apartment, with interesting days ahead of us - the first of which was due to start five hours hence. And of course we hadn't slept the night previous, and of course we weren't going to sleep this night either, so we duly didn't. And today has just been exhausting, but that tale must wait until tomorrow, because chicken, wife, wine, etc. G'night, all.

Only twenty-four hours from Puebla

Oct. 7th, 2017 03:17 pm
desperance: (Default)
[personal profile] desperance
This time tomorrow, we'll be flying into Mexico, where Karen will be harvested of her stem-cells prior to having her immune system killed off with chemotherapy. Then her stem-cells will be reinserted, her immune system rebooted, and maybe she won't have multiple sclerosis any more.

It's a month of radical treatment, during which time we'll be pretty much isolated within an apartment building and together twenty-four/seven.

I have no idea how this is actually going to play out, but one scenario says that we are going to find time hanging heavy on our hands. I do have a tradition of blogging about foreign trips; clearly this one may lack external input, but nevertheless, it is possible that I might revive this journal for the occasion. (For clarity, I never chose to abandon it; it just turns out that I can only maintain one social-media presence at a time, and Facebook is better for staying in touch with the communities I left behind me in the UK. Hence this has kind of gone by the board - but it's so much better for long-form blogging, maybe I shall revert. Maybe. Watch this space.)
Page generated Oct. 19th, 2017 12:35 pm
Powered by Dreamwidth Studios